tag:blogger.com,1999:blog-3605254543761446258.post4806057407806690972..comments2019-09-15T05:32:46.317-04:00Comments on Wheelchair Kamikaze: Happy No-Thanksgiving!The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comBlogger44125tag:blogger.com,1999:blog-3605254543761446258.post-65538319578362768342018-01-13T02:11:14.768-05:002018-01-13T02:11:14.768-05:00I am certain the vast majority of us that have bee...I am certain the vast majority of us that have been forced to stop working wish we could still do so. Working &amp; paying taxes (!) should be our new argument for finding a cure. Being &quot;warehoused&quot; because of MS isn&#39;t helping anyone. If we weren&#39;t sick, we wouldn&#39;t be the dumb slackers Paul Ryan hates. So finding a cure will help the economy &amp; stop our bitchin&#39; about drug costs, health care, &amp; this horrible disease. I hope this argument makes sense. I am more than annoyed because my &quot;specialist&quot; said there is nothing more she can do. Even if there was, I lost my insurance when I had to quit my teaching job, so I couldn&#39;t afford &quot;treatment&quot; anyway. So repeat after me - get a cure! get a job! Amy Hetfieldhttps://www.blogger.com/profile/12735674082805518690noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-60153806557910851132017-12-28T07:41:39.416-05:002017-12-28T07:41:39.416-05:00We need an ACTUP MS group like ACTUP for AIDS. The...We need an ACTUP MS group like ACTUP for AIDS. They got things done! We have to do it ourselves as we are victims of the disease and Big Pharma and fake supporters. We are victims of elebrities who hawk the drugs that do not cure us. The reason I sign as Anonymous is I have to for fear of loosing work. <br /><br />Lets do this! ACTUP MS! I hate the color orange, I am tried of being &quot;brave&quot; Thanks Marc. Please help get the word out. ACTUP MS!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-83780118527293718882017-12-20T13:18:02.838-05:002017-12-20T13:18:02.838-05:001. Awful, awful people who are able-bodied. They d...1. Awful, awful people who are able-bodied. They don&#39;t deserve it.<br />2. Hearing or reading the words &#39;wheelchair bound&quot;, as if it&#39;s the worst fate imaginable.<br />3. Not being able to walk in the woods or on the beach.<br />4. Getting run into 10 times a day by people looking at their phones.<br />5. Hearing things like &quot;I read that MS is caused by dogs! Maybe you should get rid of yours.&quot; Yes, someone actually said that to me.<br />6. Being &quot;brave&quot;.<br /><br /><br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-91760290208769669572017-12-13T05:19:47.883-05:002017-12-13T05:19:47.883-05:00Same here Marc. I&#39;ll forego exposure to &quot;...Same here Marc. I&#39;ll forego exposure to &quot;cheap ass&quot; assisted living. Paul Dyehttps://www.blogger.com/profile/14172056247149360775noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-63272860669952300602017-12-01T14:04:01.375-05:002017-12-01T14:04:01.375-05:00Marc,
You do such a good job at putting on paper (...Marc,<br />You do such a good job at putting on paper (so to speak) what so many of us think and feel and live almost everyday. Just knowing someone else &quot;gets it&quot; makes us not feel so alone. Thank you, thank you, thank you!!!<br />And by the way - how DO you get in my brain and say so many things I am thinking??? <br /><br />Dee/OH<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-41269109141080626692017-12-01T13:59:44.164-05:002017-12-01T13:59:44.164-05:00I think that this has replaced festivus as my favo...I think that this has replaced festivus as my favourite holiday. Another very entertaining post marc.<br />JonathanJonathan Leehttps://www.blogger.com/profile/17339690480041692353noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-34340452833163763142017-12-01T12:47:20.863-05:002017-12-01T12:47:20.863-05:00I was in the UK for Thanksgiving and I&#39;m glad ...I was in the UK for Thanksgiving and I&#39;m glad I didn&#39;t have to deal with Thanksgiving--either being the spectre at the feast or feeling like a surly grumpkin holed up happily with my wife and ignoring the date.<br /><br />Marc, yes. Too all of it.<br /><br />To your list I&#39;d add being not-thankful for all those who like to break things rather than build things: politicians, harrassers, bullies, thieves, and vandals of all stripes. It particularly hurts me when I watch fools breaking countries. It&#39;s been heartbreaking to watch the last three decades in Africa; now it&#39;s heartbreaking in the UK and the US. I&#39;d say I&#39;d weep for us all, but I&#39;m out of tears.Nicola Griffithhttps://www.blogger.com/profile/00401940329164370169noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-54216495898202251462017-11-29T19:56:51.443-05:002017-11-29T19:56:51.443-05:00Great to have your email, Marc, thank you. It may ...Great to have your email, Marc, thank you. It may take me awhile to send one -- emails are daunting these days -- but I&#39;d love to try. ... Meanwhile, I&#39;m very happy to hear your dreams are still vivid ... that in itself gives me hope. Anyway, I&#39;ll email soon ... but now i must get back to reading &quot;On Friends, Old and New&quot; ... what joy!! Dammit, thanks AGAIN!Amyhttps://www.blogger.com/profile/03139481757731107559noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-32553988220966124632017-11-29T19:44:40.926-05:002017-11-29T19:44:40.926-05:00Hi Amy,
I&#39;d certainly be happy to try to answ...Hi Amy,<br /><br />I&#39;d certainly be happy to try to answer any questions you have about dreaming, but this probably isn&#39;t the place. Why don&#39;t you email me: WheelchairKamikaze@Gmail.com<br /><br />I try to answer as many emails as I can, although sometimes it might take me a while, and a few slip through the cracks.<br /><br />As for dreaming, I find I dream quite vividly and almost lucidly at times. Thinking this may have to do with some of the MS meds I&#39;m taking, and also the relative lack of sleep I&#39;m experiencing probably enables extra powerful dreams, packed into the limited time I have to dream them. If that makes any sense…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-43407662237983058972017-11-29T17:31:42.169-05:002017-11-29T17:31:42.169-05:00Geeez, I&#39;m ridiculously thrilled that you repl...Geeez, I&#39;m ridiculously thrilled that you replied! I&#39;d love to do this all day long -- reply, answer, reply -- but I don&#39;t want to be greedy! And, as you say, napping is an extremely demanding obligation now ... which brings me to a question I would love to ask you, but it has nothing to do with No-Thanksgiving. ... May I? Or is this not the forum for that? My question has to do with dreaming -- or the lack thereof -- with MS. ... If you give me the go-ahead, I&#39;d love to ask/discuss that with you. ... Anyway, your writing is absolutely dazzling ... I&#39;m slowly working my way down your posts -- and what joy! Oh, to hell with No-Thanksgiving -- thank you (again)!!Amyhttps://www.blogger.com/profile/03139481757731107559noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-53681956914212340032017-11-28T12:10:30.746-05:002017-11-28T12:10:30.746-05:00Marc - boy, did you hit the nail on the head! Fro...Marc - boy, did you hit the nail on the head! From the perfect response (from a male perspective!) regarding the complete insanity of these powerful men. I nearly threw up when I heard about Charlie Rose; it&#39;s baffling. And Big Pharma? Well... no more words are needed. The &#39;tax&#39; proposal? I&#39;m a PPMS&#39;r with 23 years in the game and not a dollar left. So, I&#39;m looking at cuts to Medicare and Medicaid with quiet panic in my stomach. I&#39;m with you - &#39;NO THANKS&quot;. Except a big thanks to you for putting it all into words. Well done!Barbara Bononnohttps://www.blogger.com/profile/16106815021450842534noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-74049603186003686852017-11-25T23:09:02.098-05:002017-11-25T23:09:02.098-05:00Man, that drives me insane. If I see one more cele...Man, that drives me insane. If I see one more celebrity with MS trotted out to put a happy face on the disease my television will be in danger of being pierced by a heavy object. Please, let&#39;s see some of the uglier side of the disease, and then maybe people will understand that the status quo is NOT acceptable!The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-37828713213287491172017-11-25T23:06:39.324-05:002017-11-25T23:06:39.324-05:00What, you didn&#39;t read the thing about membersh...What, you didn&#39;t read the thing about membership dues? I&#39;ll be expecting a check and half a pound of marijuana laced fudge in the mail sometime soon.<br /><br />Glad you appreciate my scribblings so, and I hope you had a happy No-Thanksgiving…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-23925062455989384472017-11-25T23:04:13.730-05:002017-11-25T23:04:13.730-05:00Will have to see about a Christmas rent. I hate to...Will have to see about a Christmas rent. I hate to spend all of my time dwelling in the negative, and sometimes writing something a bit uplifting, even if I&#39;m not feeling especially uplifted at the time, helps keep the spirits afloat. It&#39;s almost like a form of therapy, attempting to have life imitating art. Not that anything I write on these pages is art…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-25545403079021969992017-11-25T23:01:36.005-05:002017-11-25T23:01:36.005-05:00Thanks. I hope you have the energy to do it anymor...Thanks. I hope you have the energy to do it anymore, also. Used to pump out a blog post a week, now I&#39;m lucky if I get one out every three weeks. There&#39;s just so much napping that needs to be done…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-49357552084338072382017-11-25T23:00:21.017-05:002017-11-25T23:00:21.017-05:00Yes, the list of things that I can do seems to be ...Yes, the list of things that I can do seems to be shrinking daily, and is getting to the point of making a mockery of any attempts at diminishing it. There is no good in wallowing, however, so I don&#39;t allow myself that &quot;luxury&quot;, but facing the reality clearly and stating the obvious every now and then is a necessity, I find. It&#39;s even a bit cleansing…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-46316743763878120802017-11-25T22:56:30.351-05:002017-11-25T22:56:30.351-05:00Yes, of course there are always things to be thank...Yes, of course there are always things to be thankful for. This post was written with tongue-in-cheek, at least partially.<br /><br />Oh, just a word about Biogen and Genentech. At one point they may have knocked Big Pharma down a peg, but they have now become big Pharma themselves. Genentech engaged in all kinds of questionable practices in its development of Ocrevus, and Biogen is one of the big reasons treating MS instead of curing MS has become the entrenched paradigm. If half the money they spent on researching and marketing drugs that treat had instead been spent on finding the cause of the disease, we might be well on our way to curing this damn thing by now. Yes, there drugs have increased the quality of life for many people with MS, but I often wonder if the very success of those drugs has not impeded the quest to eradicate the disease.The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-61497314465534853732017-11-25T22:49:03.807-05:002017-11-25T22:49:03.807-05:00I mourn George&#39;s loss along with you. As for t...I mourn George&#39;s loss along with you. As for the inability to not make new memories, that&#39;s one of the truly awful things about having a disabling disease. As the disabilities mount, the memory making machine grinds to a halt. Most of the memories I&#39;m making these days are ones I would truly rather forget… Yes, there are some good moments, so all is not completely lost, but never in my wildest dreams could I have pictured my current predicament. No thanks!The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-88508318049655672352017-11-25T22:45:50.681-05:002017-11-25T22:45:50.681-05:00Thank you…Thank you…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-14579320581152707282017-11-25T22:45:00.650-05:002017-11-25T22:45:00.650-05:00Yes, Tricia, the realities of MS have several year...Yes, Tricia, the realities of MS have several years ago forced me to the sidelines when it comes to holiday celebrations. Fact is, I used to love the holidays, and partook of as much revelry as possible. These days I can&#39;t even imagine…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-72026741876992671932017-11-25T22:43:22.290-05:002017-11-25T22:43:22.290-05:00I am nodding in 100% agreement. The ascendancy of ...I am nodding in 100% agreement. The ascendancy of the &quot;takers versus makers&quot; crowd is horrifying, especially when they try to dress up their vile intentions in the guise of populism. And let&#39;s not completely leave without fault those who have allowed themselves to be hoodwinked. Anger at the establishment is understandable, even unavoidable. But hitching your wagon to a bunch of blatant conmen is no way to express that anger…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-9993921938339437422017-11-25T22:38:14.670-05:002017-11-25T22:38:14.670-05:00Well, thank you. Ranting always has been one of my...Well, thank you. Ranting always has been one of my better qualities, and ms along with the state of the country/world now gives me plenty to rant about…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-8732209749738921192017-11-25T22:36:24.512-05:002017-11-25T22:36:24.512-05:00I now rival The Amazing Kreskin…I now rival The Amazing Kreskin…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-92190306754386050242017-11-25T22:35:37.513-05:002017-11-25T22:35:37.513-05:00Amen to all of that, sister…Amen to all of that, sister…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-14475146327133086922017-11-25T22:34:15.098-05:002017-11-25T22:34:15.098-05:00Yes, compiling a seemingly unending list of grieva...Yes, compiling a seemingly unending list of grievances can be exhausting. But, also cathartic. I tried to keep in mind, when confronted with some ridiculous comments or other made by a healthy person, how little they actually understand about the situation. The fact of the matter is that most people spend very little time thinking about anybody but themselves, we all tend to live in our own little bubble realities.<br /><br />Oh, and just a note on your observation about wheelchairs. Yes, being &quot;forced&quot; into a wheelchair is not necessarily a bad thing, as the damned devices lead to the ability to achieve a fuller existence. Before I got my wheelchair I had become close to a shut in, and getting the wheelchair opened up the world to me once again. Unfortunately, due to the disabilities I&#39;ve accrued in the nine years since I got my first wheelchair, I&#39;m once again largely separated from the world. MS, the gift that keeps on taking…The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.com